Time for Action

This weekend, I finally had a chance to read through the proposed GOP Health Care Bill, called the American Health Care Act of 2017 (AHCA).  I read proposed laws and regulations for a living,  but this Bill left me concerned and upset in a way few other pieces of legislation have done. Put simply, it poses a direct threat to the disability community, one we need to address with a single voice.

This bill is the clearest threat to disabled kids and adults that I have seen in a long time.  The bill would end Medicaid as we know it, prioritizing tax cuts for individuals making over $250,000 over health care for Americans with disabilities.  Amendments to the bill have so far made it worse for disabled Americans, not better.

Why all the fuss about Medicaid?  Medicaid is typically the only health insurance plan for persons with disabilities who have limited income, including the majority of autistic adults.  

However, there is still hope.  Politicians across the political spectrum are still calling for changes to this bill.  The bill will be amended before it moves forward.

Our community needs to be heard during this debate.  We must speak with a unified voice and tell Congress that they cannot take health care coverage away from autistic adults or children.  Here are the action steps all of us need to take:

1. I have drafted a letter template drafted for you to use as a base for writing to your representatives: here.  Copy the text into an email and modify it as necessary to fit your circumstances.
2. Send the letter to both of your Senators:  here.
3. Send the letter to your Representative:  here.

Too much work?  Send your letter to me, including your full address, and I'll deliver it for you, in person, with one of my autistic children.  Just paste the letter into an email, modify it and include your address, and email it to me: here.  I'll handle any printing or delivery costs. Any letters I get by noon on Thursday, March 30 will be delivered in person.

Here are some additional talking points you can use in your letter:

• This is not a "left vs. right" issue.  Medicaid is incredibly cost-effective. As noted in the article linked above, Medicaid is far more efficient than any other part of the American health care system.  Medicaid costs 22 percent less per adult beneficiary than does private insurance.   
• Medicaid is the most important disability benefit program in the country, by far.  Medicaid is typically the only or primary health insurance plan for persons with disabilities who have limited income. 
• Medicaid waiver programs have expanded coverage to disabled children who have working parents, diverting costs that would otherwise need to be borne by the private insurance market.  Medicaid’s supports are essential for parents preparing their disabled children to be productive members of society.  
• They are even more essential for autistic individuals who will never work.  For these individuals, Medicaid provides essential support to ensure that disabled individuals continue to receive care in the community where they live, rather than in the more restrictive and much more costly institutional setting.  The current Republican health care bill would take that support away.
• Despite Medicaid's incredible efficiency, covering more expensive conditions at a lower cost than private insurance, Congress continues to under-fund the system.  Many parents of severely disabled children have been on a Medicaid waiting list for years, in most cases missing out entirely on coverage during those critical "early intervention" years.

One more thing.  Tomorrow I'm going to be reminding you to call your Senators and Representatives. Even after you send the letter, you still need to call.  Your child's access to health care may well be at stake. Don't let Congress mess this up.

Disability Rights at the Supreme Court

The line to get in for oral arguments

I spent my morning at the Supreme Court listening to oral arguments in the special education case Endrew F v. Douglas County School District.  It's a critical case for our community, with implications for anyone who has a child with disabilities or who needs access to special education.

First, a bit of background:  a federal law called the Individuals with Disabilities Education Act (IDEA) requires that (in return for federal funding) states provide disabled students with a "free and appropriate public education" (commonly referred to as FAPE - get ready, the blizzard of acronyms is just starting).  To carry out their mandate, school and district officials must partner with parents to come up with an individualized education program (IEP).  The IEP sets goals for the student for the year, against which the school can test progress.  

Now, for many kids, even getting to that point is a struggle and having an IEP put in place is a victory in and of itself.  However, the case before the Court today confronted a different question: what are the school's obligations to students who fail to make substantial progress on their IEP goals, despite the accommodations offered by the school?  Courts have, of course, confronted this question in the past, but answers have been mixed.  

The first Supreme Court case on the matter was Board of Ed. v. Rowley.  The student at issue in the Rowley case was making solid progress toward her educational goals, but was not meeting her full potential.  She was a deaf student who had been provided with a hearing aid, but whose parents were requesting a sign language interpreter in class.  The Court in Rowley declined to set forth a standard that would require schools to "maximize the potential of" their students.  Instead, the Court set forth the following standards for courts reviewing FAPE claims:

[A] court's inquiry in suits brought under § 1415(e)(2) is twofold. First, has the State complied with the procedures set forth in the Act?  And second, is the individualized educational program developed through the Act's procedures reasonably calculated to enable the child to receive educational benefits?   If these requirements are met, the State has complied with the obligations imposed by Congress and the courts can require no more.

The lower federal circuits split on the meaning of this standard, with most settling on a reading that the law required that students be provided with "some educational benefit" that is “merely. . . more than de minimis.”  Since the Rowley decision, congress has revisited the statute twice, enhancing procedural protections for parents but not changing the language requiring provision of a FAPE. The question in Endrew is whether this "more than de minimus" standard is sufficient to guarantee that students receive a FAPE.  Given the discussion in the Court this morning, I'm cautiously optimistic that the Court will move away from the de minimus standard.

When I finally got in (security at the Court is serious) arguments had already begun and the Justices were focused on resolving outstanding questions they had related to the facts, rather than the legal framework. For a good discussion of the underlying facts, the petitioner's brief is helpful, starting on page 8.

When the justices did eventually turn to the framework, there was much discussion of alternatives to the "de minimus" standard. Endrew's counsel argued that various amendments to IDEA pointed to the conclusion that the FAPE standard obligates schools to "provide children with disabilities 'substantially equal opportunities' to achieve academic success, attain self-sufficiency and contribute to society."

The acting Solicitor General, Heath Gershengorn, followed the petitioners and argued on behalf of the United States that the de minimus standard was not sufficient.  IDEA, the United States argued, requires that states provide students with the opportunity to make "significant educational progress."

Although these standards were both clearly more rigorous than a de minimus standard, counsel for the school district argued that the inconsistency between petitioners' position and that of the government was telling: they're asking the court to make up a new standard, he argued, a job best left to congress. Further, the school district argued that there was not even a real conflict for the Court to resolve.  Most circuits had decided that "more than de minimus" was an appropriate standard that, as applied, provided students with some educational benefit, as required by Rowley. 

However, the District's counsel fell into a bit of a trap when answering a question from the Chief Justice.  Both parties agree that, under Rowley, a student must receive some benefit, but does that mean some benefit, or does that mean some benefit? In other words, does the Rowley test ask whether the student is receiving a marginal benefit, or does it ask whether whatever benefits the student is receiving are. . . actually beneficial?  The District appeared to agree that there had to be an actual meaningful benefit to the student, but fell back on the argument that the de minimus standard was being applied to ensure that actual benefits were provided in most cases.  

This admission, however, begs the question: if the de minimus standard doesn't mean what it says, how can it be the appropriate standard?

Most justices seemed to believe the law required that students receive actual, meaningful, benefits, and nearly all appeared to agree that the de minimus standard did not accurately represent what the law required.  Although I had expected arguments tailored closely to the ears of Justice Kennedy, this was the rare case where I saw substantial potential for cross-partisan alignment.  Some of the School District's arguments about limitations on spending clause legislation (which were largely brushed aside by the Court) could possibly appeal to Thomas and Alito, but Justice Roberts repeatedly turned away from those arguments and back to attempts to craft a standard that would accurately reflect the language of the statute.

I would be surprised if the de minimus standard survives, and that is good news for students who need accommodations from their schools.

Do Autistic Lives Matter?

An autistic man was killed by the police last week, this time in Kansas. It sounds like his crime was not doing what he was told. This follows on reports of a deaf mute man being shot for similar reasons. Here is all we know at the moment:

"On Thursday afternoon, Joseph Weber was pulled over by a Hays Police officer. Weber became flustered and took off in his car. We now know through emails from some members of Weber’s family that he was autistic and had very low verbal skills.

According to a news release from the Ellis County Attorney’s Office, Weber drove off from the initial car stop and was pursued by an officer. When he was stopped a second time, police said he got out of his car and wouldn’t follow directions of the officers. That’s when an officer shot and killed him. It’s still unclear why Weber was pulled over in the first place. . . ."

Again, all we know from the report is that he was shot because he did not comply with police orders. There is no indication he was armed, that he was aggressive, or that he threatened police in any way - if he had, we have to assume the authorities would have stated so up front. If this proves false, I'll be happy to update this post, but I'm not holding my breath.

At this point, I'm just completely numb to these killings, which is . . . awful. I don't have any solution, I don't have any productive way to respond. Can we please, please, train police officers to respond to noncompliance with non-lethal force?

It appears that autistic lives continue to be cheap, as disabled lives have always been. I wish autistic lives mattered.

#AutisticLivesMatter

Guns

I'm going to get back on my political pony here, and flog it a bit.  If it's not your thing, that's fine.  Skip the post, and I'll be back to autism in a bit.

I want to talk about the recent police killings: we've seen cops killing civilians and people targeting the cops with assault rifles in retaliation.  Things have gotten so out of hand, but I've yet to see anyone address the obvious cause.  And despite the horrific headlines, no one has any apparent answers.

If you are confused about why this is happening, the answer's actually pretty simple: our gun laws.

Easy civilian access to high-powered weaponry makes every single situation involving police officers more dangerous.

Why?  Because the police here in the U.S. have to deal with the very real possibility that any person they encounter could be packing heat, which leads to them making the (completely reasonable) assumption that everyone they have to deal with is armed and dangerous.

Police are just like us: they want to get home safely, period.  That is their primary concern when dealing with a dangerous suspect, and I don't blame them at all for assuming the worst of us.  You can't trust just anyone with the capacity to inflict immense violence on a whim, and I would go so far as to say that many (not all) of the people most inclined to carry guns around in public are the people I would trust least to use those guns responsibly and safely.

Take this gentleman for example:

Probably a good thing he didn't have an assault rifle, eh?

But even with a machete, hands up if you think this man survives in the U.S.  No one?  You're right - he'd be dead in 10 seconds.  This is a psychotic break - he is quite clearly in the midst of a mental health crisis.  Should we kill people for being mentally ill?  Obviously we should not, but of course we do. 

This is the U.S. approach:



Now none of this is to dismiss the role of systemic and individual racism, both conscious and unconscious, in the shootings we are seeing here in the U.S.  It is clear that black men are killed by the police in disproportionate numbers:


But why are so many Americans killed by the police, period?  The answer is clear and obvious.  Guns.

The numbers are simply shocking.  I strongly encourage you to read this article comparing police shootings between countries.  U.S. police kill more people in days than other countries' police forces do in years.  It's simply intolerable.  Police should protect and serve communities, not impose violence on them. 

The common denominator for countries with lower rates of police violence: restricted access to firearms and heavy controls on how and when those firearms may be carried and used.

Police reflexes that are developed to account for suspects with guns increases the risk of death for even those suspects, without guns.  When your basic assumption is that a lightly armed suspect will be taken down with mace, batons, and riot shields, you're a lot less likely to kill people.  Conversely, when you must assume that literally any situation could turn deadly in an instant, a healthy respect for suspects' lives is less likely to enter your training materials.

There are many good ideas for reducing numbers of deadly police shootings, but the simplest approach would be to limit access to guns.  With a less heavily armed population, police can safely focus on resolving dangerous situations instead of fearing for their life in every confrontation they have with a civilian. 

Sadly, I fear this is politically impossible and the madness we've seen in the last few days will continue.  I'm so sad for my country.

More Tori

The Autism Platforms

Look guys, my cute kid with a cat! But enough of that, let's talk about politics!!!  It'll be SO MUCH FUN!  Seriously, you're gonna love it.  I promise. [Insert poor Trump imitation here].

One of the things I like most about Hillary's campaign is that she has an explicit autism platform.  You should read it.  Seriously.  Click the link - I'll wait.

It's not perfect, but, overall it's a huge step forward.  I love it for several reasons.  First, it's obvious that whoever wrote the platform is fully aware that autistic individuals are 1) not just kids; 2) best served in their communities whenever possible; and 3) in need of drastically more services than they currently receive, regardless of their age.

Whether it's improved access to AAC devices for less verbal populations, improved access to housing opportunities for adults, or expanded support for caregivers, the disability advocacy community should feel heard.  I could quibble, but it's by far the best disability rights platform ever put out by a major party candidate, and we should give credit where due.

Bernie has a good background on disability rights and has co-sponsored pretty good, if limited, legislation related autism (some components overlapped with Clinton's plan, above).  He wants to expand access to health care generally, which is good for the disability community.  His candidacy is still a long shot, but I'm not that worried.

Meanwhile, on the other side of the aisle, we unsurprisingly have junk science and scare tactics.*

Trump's position on autism, that it's an epidemic and all the scary vaccines are to blame (it's not and they aren't), conveniently allows him to avoid making any plans to help actual autistic people or their families.  Instead, we should all be afraid of needles.  When pressed recently on his plan to help increase employment for autistic adults, Trump said, "We're gonna work on that. You'll be happy, just watch."

Details?  None.

I'm shocked.

Oh, but he does want to turn Medicaid into a block grant program, which will dramatically cut funding for the most important disability insurance program in the country):

Medicaid is typically the only or primary health insurance plan for persons with disabilities who have limited income. Additionally, an increasing number of individuals with disabilities are looking to Medicaid as their primary health insurance plan, notwithstanding higher levels of income. Medicaid may be available to those individuals through state-specific Medicaid waivers, through optional Medicaid buy-in programs, or through the section 1619(b) provisions, all discussed below. A lack of adequate health insurance is often cited as a primary barrier to both the ability to live in the community and the ability to succeed in employment.

Cutting Medicaid is nonsensical, except as a giveaway (and a poor one at that) to private insurance companies.  "[Medicaid] already costs significantly less per beneficiary than private insurance does, because it pays health providers much lower rates and has considerably lower administrative costs." Link. 

Trump also would repeal the Affordable Care Act, which in most cases mandates insurance coverage of Applied Behavioral Analysis therapy, the only therapy that has proven an effective treatment for autistic kids.

Without proven treatment options, desperate parents often turn to snake oil salesmen and their "experimental" treatments.  These treatments are, at best, ineffective.  At worst, they cause outright harm.

Let's elect the candidate with a plan.
#neverTrump


*Vaccines do not cause autism.  Period, end of story.  There's no debate.  This is not an opinion, this is a scientifically demonstrated fact.  If you want a debate, go elsewhere, because your facts are wrong.

Never Trump

So. . . . guys. Fair warning:  I'm gonna be talking about politics in here for the next few months. Don't worry, I'll keep up the fun autism anecdotes and pictures of my startlingly good looking children, but there will also be a healthy dose of left wing politics. If you don't want to hear it, feel free to hide me from your timeline for a while. I don't have much (okay, any) real influence, but in the spirit of doing what I can, I'll write about political issues when I have time.

Trump cannot, I repeat, CANNOT become president. Somehow the Republicans have managed to dog whistle their way into becoming the type of party where outright racism, homo/transphobia, and xenophobia are actual successful strategies for garnering a majority vote. And that's fine, I suppose (we'll never get rid of all the racists in this country) so long as we don't allow this country to follow that example.

A lot of us have disabled kids or relatives. Take a good look at this picture and tell me how well you think they'll fare with this jackass in charge. This is not who we are. Let's make sure that it isn't who we become.

Terror in Paris

****Content warning: This post discusses the Paris terror attacks, 9/11, and is one of my occasional forays into non-autism blogging.****

Wounded people are evacuated from the Bataclan Theater in Paris

On September 11, 2001, I was living temporarily with friends in Portland, across the country from my then-permanent residence in St. Pete, Florida.  The phone rang just before 6:00 am.  My friend Phillip's girlfriend, who was working as a journalist on the east coast, was calling.  She told him to turn on the TV.  He did and immediately started shouting for us to come see, waking the rest of the house.  Five minutes later, we watched the second plane hit the South tower and understood unequivocally that we were witnessing a terrorist attack.

That weekend I went to a march and rally for peace in downtown Portland, as it had become immediately and painfully obvious that the Bush administration would use those horrific attacks to justify some form of war in the Middle East, likely entirely unrelated to the attacks themselves.  I knew that protesting was essentially pointless, but I felt like I had to do something. I was, regrettably, quite correct on both points.

Tonight, on the bus ride home, I looked out the window and saw a news ticker on a television playing CNN through a bank window, "At least 60 killed in Paris terror attacks."

"Holy fuck," I swore, involuntarily.

Every time this happens I'm back in front of our crappy 24 inch Portland flophouse TV, watching Flight 175 turn into a fireball.

The death toll tonight is over 150 with over 200 more injured.  Francois Hollande is calling this a war and American idiots are calling for a ban on refugees.

So.  Here we are again.

French exchange students sing La Marseillaise in NYC's Union Square

Words are fully inadequate in this situation, but believe me when I say that I understand and I'm so sorry.

And if I can speak from experience very briefly: this may be a war, but it will not be won with guns.

In solidarity.

One World Trade Center, lit in blue, white, and red

Meiko

Drop off

Rough drop off this morning, with the boy clinging to me. I cut a deal with him that if he would go in by himself, I'd stay and watch him for a few minutes through the window.

I watched morning meeting start (circle time, when the kids greet each other) and saw him ask for and put on his headphones. He looked up and saw me watching and shot me a small smile.

I hope he had a good day.

Super Lazy Sunday

We have done literally nothing today.  All the relaxation.  The need to recharge for the coming week is strong.

River Tripping

As I mentioned on my Facebook page a week or so ago, Flynn and I went on our annual family river trip last week.  We did it last year as well, and it was . . . rough.  Hard on him, hard for me.  The trip last year was only a few months after his diagnosis, and I was having a hard time managing my own emotions, as well as his. This time I was ready.

Flynn did amazing!  By the last day on the river he was tired and struggling, but he pulled through and did awesome.  I'll start at the beginning.

We left after a night at my parents' house, which is nearer to the airport than our own.  Flynn had his headphones on as soon as we got out of the car.  I did curbside check-in for our luggage and, after talking to a airport volunteer, got sent through the staff security check-in line with an escort all the way through security.  It was awesome.  I told them he had autism and we needed an expedited route through security and we were through to the gates in 3 minutes.

Waiting at the gate with his fidget.  Headphones off for the moment.

We took advantage of the pre-boarding for every plane, and the flights were smooth and painless.  He likes flying, but also needs to be entertained.  Thank God for iPads....  He kept his headphones on for most of the flights and throughout the entire trip home.  I think it's more a security thing than anything else, as he tolerates noise better than he used to.  Or maybe I'm just used to his sensitivity and am underestimating it as a result.  Hmmm.

We arrived in Colorado and my brother met us at the airport.  Flynn was happy to see him and was SO entertained by the baggage carousel.

ALL the happy flaps.

Telling me how it works.

It was pretty awesome entertainment for the wait.

We stayed the night at my uncle's house, and got on the river the next morning.  The river is a good 4 hour drive from my uncle's house: the amount of driving out west is a significant source of anxiety for me on these trips, as Flynn doesn't always do well in the car.  However, he did a great job and handled the wait to get on the river well, playing nicely with his cousins the whole time.

Once on the river, he was even better.  He did great with the water fights (a huge thing for our family), telling everyone about his "potato gun" which was "11 times more powerful than a regular water gun" (it was a regular water gun).  I did not need to be constantly at his side, as I had last year, and he was comfortable on the other boats with the other kids.  I could tell he was having some underlying anxiety because he was chewing his lips pretty badly, but he held himself together well. 

Flynn laughing about a joke with my brother (in the background with the hat) and two family friends.

My Uncle John, with his guitar.

So.... then my phone died.  Others, more prepared than I, took a million pictures.  Here are a few good ones.

Flynn and I at our first camp ground.

Flynn batting and my brother catching.  Ball in flight.

Flynn playing with his uncle Paul.

Sunset on the San Juan, Big Stick campground.

After four days on the river we got off and drove to a restaurant, a family tradition which we skipped last year.  On the way, he was cranky and very clearly in the "rumbling" stage of a pre-meltdown, with lots of anger coming out in bursts.  Exhaustion, hunger (thanks, food strike!), and lack of routine were finally catching up to him.  At the restaurant the rumbling continued.  I ordered a massive pile of food as soon as we were seated and asked the waitress to bring it as soon as possible.  She didn't, and he spilled a glass of water and melted, sobbing hysterically into my chest. 

But sometimes a meltdown is the outlet he needs: he'd been holding it together for so long and he just needed to get it out.  After his tears he was fine. The food arrived and he ate more than I've ever seen him eat.

The drive back home was easy, and we slept well that night, waking to get on a plane early the next morning.  He was a rock star the whole trip back, even with the nearly two hour delay while we waited for luggage.

Brief stop in Denver to touch these lights.

Waiting for bags.  Thank god we stopped for fries and apple juice.

Lesson learned: never check a bag.

Getting back to his routine the last couple of days has been hard, as I expected, but it was a great trip and we are looking forward to next year.  Thanks to all the friends and family who made it possible.

Drink Your Camel's Milk, Son

Oh, internet.  On good days you bring me humor and joy, with a side of salty gossip.  On bad days you bring me all the semi-rational rage.  Today we got the latter.  See if you can spot the cause:

It's subtle!  I'm sure you're mostly hung up on the fact that I was googling a farm that produces camel's milk, but let's move past that for a second.  I'll come back to it.  For now, just read the second line down in that ad.  You will see, "Helps with Autism."

Now, if there's one thing I know, it's that my son would never drink camel's milk, which they describe as tasting, "just like milk," except "salty." 

However, I'm also pretty sure that if I were somehow able to get him to drink it, I would not see any appreciable behavioral benefit. They base their claim that the milk "helps with autism" on a single (8 page) study of 60 autistic children, whose parents were asked to administer camel's milk for two(!) weeks.  The study was conducted by a government-run university in Saudi Arabia, which I'm sure was in no way influenced by any vested interest in finding medical benefits to a local specialty product.  The study found a very mild (approx. 2 points on a 60 point scale) decrease in CARS scores for subjects who drank camel's milk compared to a cow's milk placebo. 

Now I think the advertisers probably have themselves covered from a legal perspective.  You will note that the "science and research" link on the ad mentions "anecdotal studies."  They're admitting right up front that the claim isn't really based on a whole lot of hard science.  They also note on their website that camel's milk hasn't been tested or approved by the FDA to treat any medical condition. 

But as we know, autism parents are desperate to find anything that will help their kids.  Phony cures and treatments abound, and they range from relatively harmless to outright dangerous quackery .  And while this is on the "mild" range of that spectrum, it still pisses me off to no end to see that the attitudes behind these supposed cures are nowhere near changing.

Do I think anyone is likely to be harmed by drinking a few bottles of camel's milk?  No, probably not.  But it does make me mad that autism parents (who are often quite stretched financially as it is) are being sold on the idea of paying $18 per 16oz. bottle (minimum order six bottles!) for probably a quite minimal behavioral improvement at best.

Are there people desperate enough to do this?  Absolutely.  After last year's infamous broccoli study, parents on a local special needs listserv I follow were lining up to order broccoli extract to add to their child's regimen.

Now, more broccoli also has never hurt anyone, but . . . seriously, people.  Can we stop pathologizing autistic children to this extent?  I can't blame anyone for wanting more words, better functional communication, better executive function, or a greater ability to focus.

But . . . guys, what if there isn't a silver bullet out there?

You know what I have found that works for my kid?  Love and effort.  Lots of patience, tons of love, and a huge amount of hard work from all parties: him, us, his therapists, and his teachers.  Oh, and time.  All of that together has led to huge improvements.  And I'd take that over salty milk any day.

And to any salespeople out there who might be thinking of us as your target demographic because you think our kids are broken?  You can fuck right off.

Listen to Tori

Rooms

Best Practices

When Flynn was diagnosed with autism just before his fourth birthday, I knew next to nothing about it.  I mean, I knew him and his "quirks" very well, but if you had asked about the interplay between those quirks and the diagnosis, I would have given you a blank stare.

A year later, I've educated myself. I probably read more about autism daily than most people read in their lives. This sums up my philosophy pretty perfectly.

So what have I learned in the last year? What can I share with you about how to interact with Flynn or others with autism?  Here are a few lessons I've taken away.  Some of these apply to neuro-typical kids as well, but for kids on the spectrum they can be absolutely critical.

• Be quiet.

You know those teachers and direct care workers whose voices dominate the whole room?  The ones who are always so excited to see your kids in the morning?  "Flynn!!! Great to see you this morning!" they exclaim.  Flynn shrinks against me and buries his face in the side of my leg. If he could sink through the floor, it's clear he would.  

I just want to shake these folks. Why are you still talking to him like this when his response has been consistently negative for nearly a year? Even after a week you should be changing your approach.  I know you're an enthusiastic, energetic person - that's great.  Most kids probably love you for it.  But if a kid responds poorly on a consistent basis, maybe stop it? 

For Flynn, loud is bad. Transitions are bad. Talking to people is hard. Greeting him is great, but please try to be calm and quiet.  Don't immediately demand his attention and ask for complex social interactions that are extremely challenging for him.  Let him settle in before you go there.

• Pleasantries get ignored.

Scene: Every morning in the hallway on our way in to school.
Annoying art teacher: *stands in front of us* "Hi Flynn!!! How are you this morning?!?"
Flynn:  Fails completely to respond.
Me: "Oh, hi.  He's fine, thanks." *walks around her*

If I ask him how he's feeling after he's been awake for some time and had time to adjust to conversation, he'll usually say something like, "Pretty good!"  It's adorable, because he really considers the question seriously and wants to give me an honest answer. Because literalism.  Flynn still doesn't understand that some things are said merely for social posturing.

Shifting attention is a big effort for a lot of kids on the spectrum.  If Flynn is focused on something else (like getting to class without melting down) and you say something benign (to you) like "what's up?" or "how's it going?" he will most likely fail to notice your attempt to engage him.  Less frequently, if he does try to engage, he has to switch his mindset from whatever he's focusing on, attempt to understand your small talk (which, if thought about literally, will often make no sense), check in with how he's feeling or what he's doing, or what is "up," and produce a response for you. 

While I have been trying to teach him (and hope that he soon understands) that these types of interactions are merely formalities, he hasn't gotten there yet. And at this point it's much more important to me that he successfully makes the transition to his classroom than that he interacts with the art teacher in a "socially appropriate" manner on the way there, so for now I will handle her for him. 

• Get on his level.  

If you really have something to talk to Flynn about, or something cool to show him, awesome! I love when adults are curious about his interests and all the neat things he's learning. He's a fascinating kid.

But you should know that he has a lot of trouble knowing when to pay attention to you. There's a lot of random conversation out there, not much of which is interesting, so if  you want his attention, make it obvious.  Get on his level.  Show him something.  Be direct, and patient. 

• Keep it simple.

 Processing problems are common for kids on the spectrum.  Joint attention is a common difficulty, as is sensory overload, as is simple delayed processing.  Get his attention first, then use simple language and sentence structure.  Talk slowly.  Never doubt that he's extremely intelligent, but there can be a lot of interference between your words and his mind.

• Engage him through his interests.

If you really want to have a conversation, ask him something about space or the ocean, ask what his favorite tv show is, ask what character is his favorite.  He will tell you all the fuck about it.  You will hear more than you ever wanted to hear. 

This is pretty common for spectrumites.  Once they're on a track, they stay on it until the track runs out.  Flynn has been taught pretty well to stop when someone requests a "time out."  He will take a break and let you interject something, though he probably will tell you that he was not done.  

A friend of Flynn's who is also on the spectrum loves the alphabet.  So I play with him by working with letters: spelling, arranging letters into shapes, making letters out of other things, making funny pretend words, etc. 

If you're going to meet a kid on the spectrum, ask the kid's parents about their interests.  They will tell you the way in.

• Don't force eye contact.

For the love of God, don't force him to look you in the eye.  He'll fuck you up.

• Don't be surprised if we leave.

Most of the time I really enjoy parties and play-dates, and so does Flynn. Sometimes we enjoy them a bit too much. It's pretty easy for him to get overwhelmed.  Even if you don't see it, I'm watching closely for it. When he needs a break we'll either find a quiet place to relax or we'll be out of there.  Sorry!  It's in everyone's best interest.

• Prep your kids.

So . . . this one time, I went on a trip with my brother and his daughter.  He knew Flynn had autism, but the diagnosis was fairly new.  I guess he wasn't sure what to say to her about Flynn, so he erred on the side of saying nothing at all.  She had no idea what to expect.  Flynn was moderately obsessed with trains at that point, so when it came time to play inside a real steam engine, Flynn needed to be the conductor, to pull the whistle, and to turn all the valves.  He was not about to let another kid change the way he was playing, even his cousin.  My niece, not knowing why he couldn't just play along with her, got really upset with him for being so "mean." 

This is not to bash my brother (much).  Most parents don't know what to say to their kids: that's fine.  Here's my recommendation.  "When you play with Flynn, he may want to play in ways that seem odd to you.  That's fine.  If you want to go along with it, you'll probably have fun."

Sometimes Flynn plays well with others.  Sometimes he needs constant supervision.  I can't predict which is going to happen.  If it's a good day, awesome!  If not, let me handle him - I'll do my best to direct him to activities that will lead to minimal conflict.  If he gets stuck on one thing and it's leading to problems, it would be great if you could tell your kid that he'll be done in a bit and they can come back when he's done.  I'll make sure they get a turn.

 So that's it!  You're ready to hang out with us, and all it took was a 1000 word essay!  Fun times lie ahead.  See you soon!

Happy Father's Day!

Me holding Flynn in the hospital.  He was 1 day old.

I don't think I've ever been as happy as I was in Flynn's first year of life.  I mean, look at this kid - it's just ridiculous:

Whozat lady?

Have you ever seen anyone that cute? I mean, other than your own kids, obviously.  Okay, maybe I'm biased, but he was pretty adorable, and it just got better as he got a little older and more expressive.

Snow!!!

Ohai!

 

Happy boy.

If there's ever been a kid who could dispel the stereotype of the withdrawn and isolated autistic kid, who lives a life without an emotional range, it would be Flynn. He's always been filled with an immense capacity for joy. I mean, just look at this kid.  Again!

I FREAKING LOVE THIS RATTLE

OH MY GOD, YOU GUYS ARE SO FUNNY!!!

Okay, enough pictures.  I think you get the idea.  I love this kid.  He's hilarious

Now,  Flynn has a lot of extremely powerful emotions.  As he's gotten older, they're nearly as often overwhelmingly negative as they are astoundingly positive.  But we live for those times when he's the complete personification of joy.  It's a powerfully contagious emotion, and one I hope to see a lot more of in the coming years.

As a dad, I try to be pretty relentlessly positive, but you can easily get caught up in the difficult moments and forget to appreciate the incredible blessing that fatherhood really is.

We're so lucky that we get to help create these little beings, and then watch them grow up to be. . . . whoever they are.  We get to help shape their outlook, their perspective on life.  To help them become complete people.  That is an amazing responsibility.

I have so many hopes and dreams for my boys. Mostly, I hope they can do something that brings them joy and helps make the world a better place. Since Flynn's diagnosis, my dreams for him have developed, but have in no way diminished.  In the next year, I hope to help him focus his energy on the joys and beauty of life.  I hope to help him learn more about his gifts and strengths, and how to harness them. Most of all, I hope to help him find peace, joy, and grounding in a world that can be challenging for him to live in.

My boys are the best thing that ever happened to me.  Understanding that makes my father's day a pretty special one. 

Acceptance and Privilege

An old picture of Flynn with a truck

 
I've written about my enormous level of privilege before, but not in the context of autism, specifically. 

As a parent, I try to read as many perspectives as I can, and there is a clear divide in our community between folks with severely affected children and my own perspective as a parent with a kid who would likely have been diagnosed with Asperger's Syndrome a few years back.

I've long been in the "accept my kid exactly as he is" camp, but perhaps this is just a reflection of my own privilege and that of my family.  Would I feel differently if my situation were different?  For example, a friend of mine wrote this wrenching Facebook post during Autism Awareness Month:

My son's form of autism is fairly "serious", so you won't hear from me that I wouldn't have him any other way, because you bet your ass I would, even though I love him fiercely, just the way he is. And yes, those two things can both be true.+

Her son is entirely non-verbal and has no alternative means of communication, despite having attended an extremely expensive private autism-specific school for several years.  He is likely to need one-to-one support for his entire life.

That's a hard reality to confront and accept.  Other friends of mine are also struggling heavily right now, as they are coming to terms with the limitations that may exist for their autistic children.

As for me?  I don't want to change my son and I'm not mad at autism. Autism is a very clear component of my child's personality - it doesn't define him, but it's sure as hell a part of who he is. The extremity of Flynn's interests, his behavior, his sensitivities, his need for structure and stimulation, all of these are incredibly intertwined with his autism.  There's quite simply no way to lay down a marker and say, here is where the autism ends and here is where Flynn begins.

As such, I've never been one of the parents in the "fuck autism" camp.  I don't want to get rid of his autism, and I never will.  I can't.

But maybe that is just a component of my privilege.*  Flynn can talk to me.  He can explain his interests and obsessions to me.  We can talk about them, and I can introduce new interests.  He can talk through his powerful emotions and difficult moments.  I have a way in. 

But what if I didn't have a way in and he didn't have a way out?  What if I was convinced he was intelligent, but I had no way to talk to him?  What if I couldn't even tell whether he was intelligent?

Don't get me wrong - a lot of the time Flynn isn't able to express himself.  Language can be hard for him, and his needs and feelings often aren't expressed accurately or fully.  But what if he didn't have a way to tell me anything, other than through behavior?  And what if that behavior was often obsessively repetitive, serving the need for self-stimulation and regulation rather than other needs?

Well, that would suck.  A lot.  And knowing how powerfully I love my son, I'd probably want to change that.


+This quote is shared anonymously, with permission from its author.
*None of this is meant, in any way, as an excuse for ableism in language or behavior.  Autistic kids deserve respect, no matter what, most of all from their parents.

Success!!! For now!

Today we formally added a dedicated aide to Flynn's IEP for the next year!!!

It took an incredible amount of hard work, and we're still not certain whether it was a good faith decision from the school system or if the fact that we retained a lawyer pushed them in the right direction.

I'm still upset that it took this level of effort and advocacy, when it has been obvious that he needed an aide for over a year, but for the moment I'm going to try to enjoy this unfamiliar feeling of success.

Acceptance and Diversity

I'm incredibly fortunate to be sheltered in groups that work to support my son as he is and that work to include adult autistic people and perspectives.  I have learned so much from these groups, in particular from adult autistics who have been where Flynn is today. 

I'm very grateful for these sheltering communities, but it's always a painful shock when someone intrudes on a space I consider safe with attempts to impose "expert" viewpoints, which, to me, are both incredibly offensive and truly harmful.

This . . . idea . . . that we can or even should be working to "cure" a child's "symptoms" of autism, in other words, to reduce or eliminate stims, to increase eye contact despite its discomfort, to remove patterns of focus or intense interest . . .  This idea is still powerful in our community. 

A lot of people think they know what is best for our kids, or even believe that they know our kids better than we do, simply because they have studied autism and are "experts." 

Anyone can call themselves an expert.  I would not presume to do so, but here's what I know as a parent:  forcing an autistic kid to try to conform to a neurotypical ideal of "normal" is actively harmful.

Work to provide your child with positive assistance in communication and in understanding peer interactions. Work to reduce behaviors that could be actively harmful to others.  These things are fantastic.  They are not antithetical to autism.  The viewpoint that autism is a challenge to rise out of or overcome. . .  This is neurotypical privilege. Stop it. 

My child, his manner of thinking, his diverse perspective, is equally valuable to any other child's.  His neurology is no worse than yours.  It may lead him on a different path from you or me, but that path is only different, not less.